Monday, August 4, 2008

Breast cancer, a personal history

On September 4, 2005, when I was 55, I discovered a Jujubee-size lump beneath my right breast. Six weeks earlier, my yearly mammogram had noted nothing suspicious. I made an appointment with my gynecologist, who said it was a cyst and suggested I wait six months to see if it changed. "If you're really anxious about it," she said, "you could see your dermatologist or a breast surgeon, but I don't think it's anything to worry about."

I felt like a hypochondriac as I made an appointment for an ultrasound in preparation for seeing the breast surgeon. Although the lump was visible and palpable, the ultrasound showed nothing. The breast surgeon examined me and said the lump was a fibroadenoma, a benign growth. As long as I was there, however, she said I might as well have a fine-needle aspiration. That procedure revealed fast-growing, highly irregular cells. An immediate lumpectomy with sentinel-node biopsy was scheduled.

The pathology report revealed I had an unusual kind of cancer: hormone-negative, her2neu-positive invasive lobular cancer. This meant the cancer was both "sneaky" (lobular cancers tend not to show up on imaging tests) and "nasty" (her2neu-positive cancers tend to be aggressive). In addition, the margins were not clear, and there was a micrometastasis in the sentinel node. A second surgery removed my axillary nodes—they were clear—but left lobular carcinomas in situ (LCIS) in the tumor margins. My surgeon assured me that LCIS were nothing to worry about. She said they were markers, not precursors, meaning that they indicated a predisposition to develop cancer but were not themselves cancers. I did not need further surgery, she said.

On an impulse, I sought a second opinion. My second-opinion doctor, an oncologist, said these were extremely high-grade LCIS and should be surgically removed. While I was trying to figure out whose advice to follow, a PET/CT found a lesion on my liver suspicious of metastasis. My wretched diagnosis was now much worse. My surgeon, oncologist, second-opinion doctor and liver specialist were now in agreement: I should begin chemotherapy without delay. A liver metastasis trumped LCIS.

So I had the standard four rounds of Adriamycin and Cytoxin, four rounds of Taxol, 25 radiation treatments and a year of Herceptin. I lost my hair, my fingernails turned brown and fell off, and my skin turned gray—but my breasts looked great! The lumpectomy scar, in the crease under my breast, was invisible, and that breast was actually bigger than the untreated breast. Meanwhile, the liver scare receded when subsequent MRIs suggested the lesion was a hemangioma (a harmless cluster of blood vessels).

However, I became more and more concerned about the LCIS. I learned from my reading that their presence in one breast raised the likelihood of cancer in the other. Since my original tumor was not detected by mammogram or ultrasound, I had no confidence that either breast was cancer-free. I was doing breast self-exams daily—a joyless pastime. By the time I was midway through chemo, I was sure I wanted a bilateral mastectomy. I didn't care about my breasts. I wanted peace of mind. As soon as I finished radiation, I consulted a breast surgeon at another hospital, who agreed to do the surgery. One caveat: she wanted to wait six months for the radiation burns to heal.

Initially I assumed I'd have reconstruction, but the plastic surgeon told me implants were not an option because I'd had radiation. He said I could have a DIEP flap, in which fat scooped out of my abdomen would be transplanted to my chest, but because I was slim, the resulting "breast mounds" would be "modest." It was a lot of risk for a minimal effect. I spoke to women who'd had DIEP reconstruction. One was thrilled with hers, but two others were unhappy. One was in constant pain 10 years later.

What had gotten me through the emotional and physical trauma of cancer was daily yoga. Perhaps because my cancer initially escaped diagnosis, I thought about dying nearly every moment of every day. Only yoga gave me relief from these "intrusive thoughts," as they are called. I couldn't face putting yoga on hiatus to recover from reconstruction that might not work.

I know the real danger of breast cancer is not recurrence but metastasis. But having already done all I could to prevent metastasis—chemo and Herceptin—I was intent on reducing my risk of recurrence. I did worry that I would have regrets, but a friend suggested I write down my reasons for the bilateral mastectomy so that if I had doubts I would remember why I had pursued it. That was excellent advice—though doubts have yet to arise.

I asked my surgeon for a "10-year-old-boy look," and that's exactly what I got. I went into surgery at 4:30 on the afternoon of October 4, 2006, and was out of the hospital the next day at 6. The only real discomfort was nausea from the anesthesia. I never needed the prescription pain medications I was sent home with. I was surprised by my lack of reaction when I saw my naked chest for the first time. It was as if all emotional attachment had disappeared along with my breasts. The two drains were a nuisance, but they came out a week later. There was some fluid accumulation, which was aspirated, and an itchy rash that moved around my chest for a month or two. I was back at work—and on my yoga mat—two weeks after surgery.

My insurance paid for state-of-the-art prostheses and bras, so nearly $2,000 worth of falsies and pocketed lingerie fill my drawers, but I almost never wear them. They're not practical for yoga—the first Downward-Facing Dog would spill them onto the mat—and since I didn't wear a bra before my mastectomy, I've had trouble getting used to wearing one now. Anyway, I kind of like my flat look. I really do look like a 10-year-old boy, which is not a bad look for a 58-year-old woman.

I am still troubled by "intrusive thoughts," but they're getting a little less intrusive and a little less obsessive.


Robin Amos Kahn said...

Thank you for writing about this. I didn't remember all the details and that you're going for the second opinion really saved your life.

Mia said...

Well, it didn't save my life necessarily. But it reduced my chances of recurrence, I think.